Friday, February 6, 2015

Only love Jude........hardest blog I have ever written.

I know people have been worried but we needed a day to ourselves today. Please be patient as we adjust to what is going on.

Jude has good hours and bad hours. Fortunately last night he had a very good hour. He was very smiley and looked much more like himself. His respiratory rate and heart rate were still high but he was much better than the day before. Here is a great shot of how he looked and how responsive he was to me.



Mike and I had a hard day yesterday with lots of tears shed. Even though Jude is doing better we have faced reality and listened to the doctor. We know Jude has really suffered and once this pneumonia battle is won there will still be continued suffering on the horizon. As the hospital stated "at this point Jude will not get well but we can make him better".  So we had to make difficult decision regarding actions to take if Jude should code again. We also made a very private and very difficult decision regarding Jude's continued care. We know that despite the happy pictures I post like the one above the other pictures like below that I don't normally share are far outweighing the good pictures. This was a shot my friend Gina took without us knowing in PICU.



We watch as Jude's respiratory works three times faster than ours does because his lungs are just riddled with scar tissue, disease, and fluid. The X rays are almost solid white now.  I hate seeing Jude suffer, gasp for air, and struggle.  After watching a child across the hall code yesterday I just fell apart. The crash cart and life saving measures were loud and overwhelming. This only landed her on life support and my understanding is from transactions last night this also ultimately failed. Mike and I just clung to each other and cried and decided this isn't what we want for Jude.

Jude reminds me of the movie "The Perfect Storm" because we ride the large waves and get excited when we see the daylight in his bright smile. However soon the dark clouds rise again and Jude is enveloped in breathing difficulties and anxiety. So this morning I met with hospital staff who went over a plethora of information. We then signed sensitive documents I prefer not to discuss and the Teddy Bear Transport came and picked Jude up. I looked around the Cook's Children's hospital room and took it all in knowing I wouldn't be back. In my own way I guess I was saying goodbye to the facility that has served my son so well. We loaded Jude into the ambulance with a nurse, a respiratory therapist, and an EMT by his side and we headed for home. We were taking him to his bed, his family, his home, his familiar.

When we got Jude home my house was filled with medical personnel. Although their words were kind and gentle I felt such finality even though I know it's not the case at this point and time. I felt like Mike did, that we could no longer rescue Jude and as his parents that feels like our responsibility. Nurses surround Jude's bed now and hospice is here making sure everything is the best it can be for my little boy. I guess I have heard two lines that were fitting today, "This is done from a place of love with an understanding that you care enough about your child to no longer let them suffer" and "this F'ING SUCKS". The latter comment may be the best one to sum up the situation.

I guess the one thing this horrible emotionally raw situation has taught me is to cherish each and every amazing moment. I am not sure if Jude will be with us days, weeks, months, or years but he is with us now. He has been my teacher and I am so very blessed to have him as my child. No more hospitals Jude! No more ouchie Iv sticks, blown veins, long ER waits, or PICU stays, only love Jude.....only love.



23 comments:

iown3 said...

My thoughts and prayers go out to you and your family.
We love you guys..

Blake Tremaine

Anonymous said...

I have read your blog for a long time and I am so sorry! I wish that many of the families in the adult critical care unit that I work in had the same wisdom that you have! My thoughts and prayers are with you all!

Maggie J.

Colleen Payne said...

Prayers of comfort for you all. Jude has touched so many lives.

Anonymous said...

Jen.

I too have read your blog for a long time. I check it regularly. You ARE rescuing Jude! Rescuing him from the pain and unpleasantness of more hospital stays. Saving him from interventions that add no quality to his life. Only the bravest and most selfless patents can do what you are. You and Mike are amazing! My thoughts are with you even though we have never met!

Annie.

Kristen Clack said...

Love, so much love, and prayers to you all.

Anonymous said...

It takes good parents to take care of a child, but it takes great parents to go through what you guys have gone through. Letting completely go of the self to love 100% that child without demanding anything from jude. I hope you guys ate greatly rewarded for helping jude be so happy in his short life.

Anonymous said...

Prayers and love to you and your family. May all your days from here on out be filled with love. I will keep you my thoughts.

Amy Meche

Anonymous said...

Your posts leave me breathless.
Jude and your family are in my daily prayers.
Your family's strength amazes me.
You all are loved.

Amanda shelton said...

I also do not know you or your family, and I pray God hold you in his hands and bring you peace love comfort and understanding that only he can bring

Amanda shelton said...

I also do not know you or your family, but I pray God hold you and your family in His hands. May He bring you love, peace, comfort and understanding that only He can bring.

marie said...

Sitting with my little boy with severe Cerebral Palsy on my lap, my tears overflowing. In the end all we can do for our kids is to love them, it's not always easy. My heart breaks for you and I send you light and hope and love from us here in Swden. Marie

Anonymous said...

You are a beautiful family and thoughtful, wise and loving parents. I am honored that you share your experience so the rest of us can learn. prayers

Anonymous said...

I can only pray to have your strength when we meet with palliative care for our 11 yo daughter next week and will be asked to make "decisions" for her. As I read this, two words kept coming to mind, selfless love. Will keep you all in my prayers.

Ellen Seidman said...

Oh, Jenn. I have been here with you since Jude was a baby. You have rescued Jude time and time again, and you are THE most amazing mother to him. The love you've given him from day one has sustained him as the medical pros have done what they could. Your attitude, as always, is spot on: Cherish every moment. Hugs from far away.

x o x o u i said...

Like so many others, I've been with you from afar, from the beginning. Just the other day, I re-read one of your first posts...from when one of the worst case scenarios was that Jude would grow up "normal" but with dyslexia. Wow! That roller coaster of life...you never know which way it will turn.

My heart goes to Emily, you, and Mike. You're a good mom, Jenn. Don't ever doubt yourself. ♥

Katie said...

I've followed your blog since 2009, I think I've read every single post and I check in everyday for updates on Jude.
As a parent my heart breaks for you, Mike and Emily. You have always been amazing parents to Jude and he has felt nothing but love from you. I don't normally pray but tonight I will be saying a prayer for your family and especially for dear Jude.
God bless
Katie

MEME said...

sometimes you have to love them enough to let them go! as hard as that is!my husband died tonight of a brain bleed I could have kept him on life support but I loved him and I let him go.my heart is broke but he isn't hurting any more. may god watch after you and the ones you love.

Micernice said...

Love to you all.
Elissa

Anonymous said...

Praying for your peace.

Anonymous said...

Only love to you and your family. May your sweet Jude feel all the love that is being sent.

Anonymous said...

a total stranger who has read your blog for years- you and your family are true angels.

Anonymous said...

In my thoughts hugs and love sent your way <3

Sharon Blontz said...

I have your family in my prayers.